Friday, August 28, 2009

Tips For Survival

Post a NY Times post…

What a rush!! For almost a day I was famous thanks to all the great comments on the NYTimes.com essay : When Cancer Changes Your Appearance. I was humbled by the response, and filled with joy at the thought that my story helped others. Thank you.

One friend suggested I share my patient experience with those for whom illness and/or the medical system are relatively new and consequently monumental. There is a lot that I could waffle on about, but I’ll try to keep it usably concise.

The diagnosis: the doctor tells you that you are actually quite sick. Alarm bells go off in your head, your emotions trigger an instant need for oxygen or a run to the bathroom, and if you were asked what 2 + 2 equals you’d probably say, “milk!” As the doctor continues to talk, your otherwise together self dissolves into an emotional mess. So take a friend, spouse, relative with you to act as your support and to take notes. My wife Diane has done that for me throughout my medical mishaps - her notes and sense have proved invaluable.

Next stage: you’ve got the problem - how do you solve it? You feel like you are facing Mount Everest with one crampon and a goat. You want the best advice possible, but where is it? There are so many ways to find information. Burying your head in the sand isn’t one – this is where and when you start preparing for the fight to come. I suggest you ‘network’ your way to the best solution. Email and/or call all your contacts and ask if anyone knows anyone who has had your condition. Ask all your doctors whom they might recommend. Once you’ve got a few names, look them up on line – or get a friend to – to learn more about them.

Beth Israel (BI) Med Center’s Head and Neck Center for Cancer has treated me for 4 years. I found them because the wife of a fellow Master’s program graduate worked at Cancer Care (www.cancercare.org a great resource for all kinds of cancer information.) Her boss was the wife of the head of BI’s program. So through them, I called him. It was an encouraging conversation. I verified the excellence of BI’s Head & Neck cancer treatment by talking with several independent oncologists. I met with Dr. Persky, an oncologist there, and was again reassured of the high quality of their service. My original diagnosis had been done at NY Presbyterian Hospital, however their program wasn’t cohesive enough to meet my needs. I also discarded my other choice, Memorial Sloane Kettering, for their tendency at the time to treat patients like numbers, which I got from patients who were currently being treated there and I am definitely not a patient who tolerates that style of treatment.

Treatment: Like preparation – research your options. Get second opinions before you plunge ahead. Your insurance company should allow this and doctors encourage it. You shouldn’t feel that you are betraying your current doctor by “going behind his back” for another opinion. Either you will find a difference of opinion, giving you cause for further preparation, or you will be reassured that you are on the right course.

Tips during treatment:
  • Have your medical history prepared and ready. Yesterday we were behind a woman who had just handed in pretreatment forms that she thought she’d filled out correctly. The receptionist said nicely, ”no dear, you’ve got to fill out this, …and this, …and this top part only, and all of this page, then you must sign and date here, here and here, OK?” as she flipped through what resembled the next Harry Potter novel. The woman’s jaw just dropped, it was deer in the headlights time for her. In order to cut through much of what she was facing, I suggest you summarize your medical history in a short form. (You can take a look at my medical history form as an example. It should include the dates of injuries, diagnosis, surgeries, the hospital of doctor involved; plus a summary of your current conditions; a list of your medications; and a list of your doctors with their contact numbers. This will help more than you can imagine when you go to a new doctor, go for a scan, or go for surgery etc. Just submit this with the forms they give you and scrawl (with glee) “see attached” on their forms.
  • Always take something to pass the time – a book or iPod is my preference. You will run into delays everywhere in the medical system, especially in the emergency rooms!
  • If you get nervous about tests, let your doctor know and be clear about it. It made a big difference when my doctor gave me a prescription for Atavan (or the generic Lorazepam) the anti-anxiety drug. I am claustrophobic so I always take one before PET/CT scans and MRI’s as the machines are very close.

Insurance issues: when you get your diagnosis, call up your insurance company to find out how they deal with your problem.
  • Are you going to have to get referrals to every doctor (usually ‘’yes” with any HMO.)
  • How can you see someone who’s “Out of Network?” This is not impossible, but you will have to convince the insurance company that this doctor is unique in his ability to deal with your problem and that they don’t already have such a specialist on their list of approved doctors. The specialist you want to see will usually help you try to win this argument.My kidney and pancreas transplant was “Out of Network” in Pittsburgh, PA. I petitioned beforehand with Oxford and succeeded to gain approval.
  • Also one doctor at at center may not take your insurance (Dr. Persky didn’t take mine) but another at that center may (Dr. Sessions did.) So keep pressing until you are satisfied.
  • Try to pay your co-pays at the doctor’s office the day you visit. The way some insurance companies present bills for co-pays can be very confusing, and they are often wrong. So try to keep your records sorted, the paperwork you might receive could be overwhelming if you don’t.
  • If you get a denial for coverage from an insurance company: fight it!! Like a parking ticket in NYC. Insurance companies lean towards using “denied” often, and often on wrong information.Call the insurance company, if you don’t understand something on your statement. They can be very helpful in explaining, and can often correct mistakes they’ve made over the phone.
Preparing for surgery: I believe that relaxation and positive thinking are absolutely necessary for you to recover quickly and with the best of health. I recommend Peggy Huddleston’s “Relaxation and Healing” (available on amazon.com) which I listen to for at least a week before surgery and for several weeks after. She uses a positive imagery (I like to envision Cape Cod sand dunes, the rustling dune grass, and the ocean) to help you relax and visualize images that help you feel good.
She also recommends you talk to your anesthesiologist before the surgery to ask her or him to literally whisper sweet, positive images as you go under and the same again as you come out. I love the conversation I have with them just before surgery – “Doctor as you knock me out and also as you bring me back, could you please describe Cape Cod sand dunes, and the wind and sea, saying how good this surgery will be, and how well I will recover afterwards at the same time?” Usually the anesthesiologist pauses, “…uh?” and I get the surgeon, who likely as not has already heard me ask this before, to pitch in on my behalf. It’s fun to spin it out a bit! But I swear it works!! In the past 10 years I’ve had about a dozen surgeries, 3 which lasted over 10 hours and one of which was 17 ½ hours and my recovery is always remarkable and, oddly, with very little pain.

In hospital: Be as nice as possible to everyone, absolutely everyone. The nurses work extremely hard and are the center for everything that happens in your room. They all have names, it helps if you get to know them and use them. Diane, God bless her, stays with me all the time, sleeping over in the reclining chair or, if we are lucky to find one, a cot. She helps by getting clean linens and making the bed etc. Just as with the “cable guy” in my early post, the nurses love the help and we get great attention when it is really needed. Diane’s staying with me helps me recover quicker too.
In hospital too: check your meds! Despite their best intentions, the doctors and nurses can mess up your meds, especially if you’re already taking some prior to admittance.

That’s all I can think of for the moment. To be a successful patient you have to be determined to beat your problem and to do it with a laugh and a smile on your face! So have a great day! Yep, because it is a great day!

12 comments:

  1. Wow - thanks for that primer. Such good, practical advice. I will remember that plea to the anesthesiologist, but my preferred image with be the Sangre de Cristo mountains at sunset!

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  2. I like your suggestion to write up a short version of your medical history. I think that's probably good advice for anyone, cancer patient or not. A lot of the health issues we have over the years can seem so insignificant, and then all of a sudden something happens that makes them all relevant. I've only had a few medical problems, but my medical history already resembles a Harry Potter novel, albeit one of the earlier, shorter ones. You've made me realize that it's probably a good idea to make my own list.

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  3. Thanks Alana (or Xander?): Yes, I really find it useful. Besides, I can never remember when everything happened - so it's saves me the annoying time of trying to remember!
    Have a great day!
    Brian

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  4. Good advice about the insurance; it's so tough and confusing. I wrote something about it on my blog last year to help out some co-workers.

    I wish you all the best and am happy to read along with your journey. Thank you for sharing everything with us.

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  5. Hi Brian,
    I read your article in the NYtimes and was wondering if you had ever heard of lymphatic drainage? My mother is a massage therapist who specializes in this and has been able to help many cancer patients relieve the swelling and pain that can accompany cancer and the removal of lymph nodes. I don't know very much about it but thought that it might interest you and wanted to pass along my mother's e-mail (Barbara, weippertk at bellsouth dot net). She might be able to help you find a NY therapist or answer any questions about it for you. You can also check out vodderschool.com for more information.

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  6. Hey Brian,

    Almost like everyone else, I came to know about you through the NYT article. My wife forwarded the article to me actually. I'm a cancer survivor myself. I'm not facing the challenges you are, but I can definitely say that your positive attitude is your best tool to fight cancer. If you can't beat it 100%, you will at least manage to delay it or confuse it a bit. (Your cancer cells are probably thinking: why is he hanging on still? Why can't we take him down?)

    I don't mean it in any shape or form of sarcasm, but your new face makes you look like a charming character from a Hayao Miyazaki movie. I find it kind of unique (in a good way). Maybe you should contact his studio and share your story. Your features might make it to his next animation movie. You never know :)

    Keep fighting; not only for your life, but for many cancer survivors who look at you and can only think to themselves: What a great character!

    Sincerely,
    Loaay
    Kuwait

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  7. Thanks Loaay. Yes, attitude is a big part of survival - my surgeon said I am still alive due to my stubborness!
    Brian

    Roxanne: Yes, I've tried lymphatic massage but it hasn't neen succesful. Mostly I think because the lymphatic system that hasn't been removed in my neck dissections has been compromised by both radiation and cancer.
    However, I've just discovered that if i sleep on my right side with a comfortable towel under my head I lose a great deal of fluid through my nose and mouth. It seems my mucus membranes are my filters. This has reduced the head swelling quite a bit! Amazing really (and I might add sort of disgusting!)
    Thanks for the suggestion.
    Brian

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  8. Brian,

    You are so right about keeping good records of your medical history and of your treatment. From the time I was diagnosed, I have kept my patient questions, notes from MD visits, legal consents/Health Care Proxy documents, Physician profiles, lab results, drug prescriptions/doses, pathology results, surgical notes, radiology reports, etc. in a huge 3-ring binder. It not only makes it easier for me to remember "When was my last Brain MRI?", but it greatly helps our loved ones to have all of this documentation at hand, should we become unable to communicate for any reason.

    I joked with the anesthesiologist during my second breast surgery: while he was administering the drug(s), I asked him if I would be lucid in a few hours, "Because the premiere of 'Heroes' is tonight, and I really would like to watch it as it actually happens!". He seemed very amused, and everyone in the OR started laughing out loud - I'm sure that most patients aren't joking around at that moment (except for you and me!).

    I look up to you, Brian. I'm so thankful that you are here, and that your wonderful sense of humor is intact.

    Jane

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  9. I am so impressed with your humor and perserverance. I am a Stage IV breast cancer survivor and have launched a blog called Miracle Survivors www.miraclesurvivors.com.

    I am also writing a book about that features people around the country will feature 25 cancer survivors who were given a terminal diagnosis, but shocked everyone by thriving years past their prognoses. I think you would certainly qualify. I invite you to visit my blog and let me know if you'd be interested in sharing your story. Thank you.

    Tami Boehmer

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  10. I can't believe how much I've missed. I guess moving Liam back into college occupied me more than it should have. At any rate, I'm catching up on your blog now.
    All I can say is, Wow! What tremendous advice. I will definitely be handing out this post. This information is frequently needed by my clients and I could never say it as well or as feelingly as you. Thank you!

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